May 2003: I started getting sick on a Sunday and felt a little worse on Monday. I didn’t start getting really sick until Tuesday, when I started vomiting and having watery diarrhea. I also had a really high fever, probably around 102 degrees, and really bad chills. I thought I had the flu. It was really bad, and only getting worse. Wednesday I was still vomiting and couldn’t eat. I couldn’t even make it off the couch to throw up, that’s how weak I was. I laid on the couch all day, drinking water and telling myself that I had to go to school that night because I was supposed to perform in a play for my drama class. I did not make it to the play. My grandmother told me if I wasn’t better by the next day, the 29th, she was taking me to the ER. Needless to say, things only got worse. I started becoming delirious and my breathing was rapid and shallow. I felt like I couldn’t catch my breath, so I was hyperventilating. I remember having to cling onto the hallway wall to make it to our living room without collapsing. My world was spinning and I fell onto the couch. I guess I wasn’t responding to my grandmother when she asked me questions, so she decided to call 911 instead of trying to get me into the car and take me to hospital. An ambulance and a fire truck arrived at my house within minutes and the EMT’s brought a gurney into the room. They had to help me onto it, and then they strapped me down and wheeled me out the door. One of the EMT’s tried to put an IV into my arm, but seemed to be having difficulty. I was worried about throwing up on him and he said not to worry. When we arrived at Emanuel Hospital, the doctors couldn’t figure out what was wrong with me. My blood pressure was somewhere in the range of 60/40, and my heart rate was skyrocketing. They thought maybe something was wrong with my heart. My memory is pretty choppy at this point, but I remember throwing up on a nurse’s shoes, and my primary care physician coming in to see me. The ER doctor told him my symptoms and asked if they should keep me and my doctor said, “Are you crazy? Send her to the children’s hospital!”
I lived in a small town called Turlock and the hospital there is not very large, so they Medi-flighted me to Children’s Hospital of Central California within an hour or so of me arriving. I was not looking forward to the helicopter ride. I was, once again, worried about vomiting on people. I can’t recall much about the ride, other than it was extremely loud. When we landed, they wheeled me into the hospital and doctors started asking me questions. One of the doctors gave me an extremely uncomfortable pelvic exam, I assume looking for a tampon. I believe I was hallucinating at this point because I thought I was on a pink couch wearing a diaper, and that definitely was not the case. Then I remember the pain. I was in the worst pain I’ve ever felt in my entire life. The nurses were trying to take x-rays and examine me and I wanted to scream every time someone touched me because I was septic. Then my lungs started giving out, more than they had, and I couldn’t breathe. I remember them putting an oxygen mask over my face and me fighting it off because I thought that was what was making it so hard to breath. I was so scared. I had developed Acute Respiratory Distress Syndrome, pneumonia, kidney failure, and my heart was also having issues. They intubated me put me in an induced coma for 9-10 days, during which they filled me up with 40 pounds of water, they had to cover me in ice packs because my fever was so high, they had needles in every part of my body they could put them, they treated me with all kinds of IV medications such as Vancomycin, Clindamycin, Ceftriaxone, and Keflex, and they discovered the cause of my severe illness – Toxic Shock Syndrome from tampon use. I tested positive for staph aureus and streptococcal bacteria.
At some point, I woke up and still had the breathing tube in. They told me they were going to extubate me, and I knew it was not going to be pleasant. Because my lungs still had so much fluid in them, they had to stick a suction down my throat and have me cough, which caused me to throw up all over my face. Extubation is a terrible feeling, and the tube left my throat sore after. After that experience, I realized I had a catheter in and I was in a diaper. Not the greatest feeling in the world having someone have to clean you at age 15! And of course, my respiratory therapist, Tom, was a gorgeous man, and I didn’t want him to know that I needed to be cleaned – I thought I would die of embarrassment. Oh silly crushes! But it really upset me to be so vulnerable. Silly 15 year old me. After I got over the initial shock of being in diapers, I asked what day it was. It was (roughly) June 6th. I didn’t believe them. Last I remembered it was the end of May and I had finals the week of June 2nd. Well, missed all my finals and swimming the last day of school! Bummer! (It’s amazing the things you get bummed out about at age 15!) I had been “asleep” for 9 or so days. I was extremely weak since the muscles in my legs hadn’t been used and I lost my “softball calves,” as I lovingly refer to them. The first time I tried getting out of bed, I didn’t realize my legs were so weak, and I fell and one of the nurses had to catch me. When I got back into bed, my grandmother and uncle came in to visit me. They told me about how sick I was, how they didn’t think I was going to make it, and that the doctors had only given me a 20% chance of surviving. My grandmother had been staying in the Ronald McDonald House that was at the hospital since it was so far from our home in Turlock. After 15 days in the hospital, I was finally discharged on June 12th, 2003, the day before I was supposed to start summer school. I actually tried to go on the second day, but because I was still really weak and had an open wound on my tailbone, I couldn’t continue to attend.
One of the side effects of TSS was that the palms of my hands and soles of my feet were peeling. It was gross, and painful, and when I got home, it hurt to put my feet on the cold floor or hold a hot/cold cup because the skin was so sensitive. I had also developed and pretty nasty bedsore on my tailbone from not being turned over enough. It took 4 days for the hospital to get me in one the rotating beds, and as a result, I developed a “coccygeal ulcer.” NOT FUN. It still bothers me to this day, 9 years later, especially if I sit for too long. I realized how sick I had been after I woke up. All the nurses told me they couldn’t believe how sick I was and that I was the sickest patient they had seen. The ones who weren’t my actual nurses remembered me by my room number in the PICU: 2517. I can’t believe that my body was able to go through something like that and come out relatively unscathed. The only real effects from my TSS are the stretch marks that I have from being filled with so many fluids, and the bedsore. I did lose a lot of hair in the months after my hospitalization too. Unfortunately this isn’t the case for so many girls, and I never really realized it before. I am extremely lucky to be alive.